The stories of young people living with a liver transplant

Abstract

Adolescence is a difficult time for those with chronic illness because of the constraints of the illness on developmental tasks. Little is known about the impact liver transplantation has during adolescence. In this study we aimed to explore, in their own words, young people's lived experience of life after transplantation. We used semistructured interviews to collect narrative data, and used a purposive sample of 14 young people in early, middle, and late adolescence, transplanted for a range of chronic, acute, and metabolic liver diseases. We analyzed the transcripts using a framework in which analysis progresses through a five-stage process of matrices. Six main themes emerged, related to relationships, affect on schooling, tiredness and fatigue, acceptance of the burden of medication, communication with health professionals, and view of the future. These findings add new insight into the transplantation experience, which might lead to improvements in care and help direct further research in this important aspect of clinical care.